Respecting neurodiversity: Interactions between autistic people and public services

Dr Katie Maras is Lecturer and Dr Jade Norris is Research Associate in the University of Bath’s Department of Psychology. They are both members of the Centre for Applied Autism Research team

Two-way communication forms the bedrock of the provision of most public services and must be effective in order for all individuals to receive appropriate access to care, services, employment, and justice; services should be accessible and delivered in a way that respects the differing needs of the individual. However, society is shaped for neurotypical people and largely excludes those who think differently, despite the fact that neurologically diverse people – from those with autism to ADHD to dyslexia – constitute a significant proportion of the population. In this blog we present autism as a case study for how the critical points of interaction between individuals and public services could be better designed to respect neurodiversity, taking the criminal justice system, healthcare, and employment interviews as exemplar contexts.

Autism is a lifelong neurodevelopmental disorder that affects a person’s interests, behaviours, and how they communicate and interact with those around them. It is currently estimated that around 1 in 68 people are autistic, with the recorded incidence rising sharply in recent decades. Autism impacts all areas of life and costs the UK economy at least £32bn in lost earnings, interventions, care, and support for people with the condition. A major factor in this cost is that autism is lifelong and can affect independent living and employment – despite possessing a range of valuable skills, 85% of autistic people do not work full time. Furthermore, autistic people are more likely to have interactions with the police (despite no evidence that they commit crimes at higher rates than the general population), and are more likely to have co-occurring physical and mental health issues, meaning that they are more likely to require health and social care provision.

Compounding these issues are core differences in social communication coupled with specific memory difficulties, which can make even everyday social interactions difficult and highly anxiety-provoking for autistic individuals. These difficulties are therefore particularly exacerbated in formal, ‘high stakes’ interview contexts such as police interviews, personal health consultations, and when being interviewed for a job. Performance in occupational interviews is a crucial determinant of employment prospects, yet social, cognitive, and communication difficulties mean that autistic people are often unable to perform to the best of their abilities in interviews. Differences in introspection and social communication are also likely to make relaying relevant information to healthcare providers difficult, unless these differences are appropriately supported. Our research has shown how current police interviewing models are ineffective in supporting autistic witnesses to provide ‘best evidence’ because they were developed based on neurotypical memory retrieval and communication styles.

We know, for example, that autistic people have difficulties in recalling personally experienced specific episodes from the past under ‘free recall’ conditions. However the use of open-ended and episodic-based questions is ubiquitous within healthcare, the criminal justice system, and employment interviews (for example – “Tell me what you saw yesterday”; “Tell me about the fall”; “Recall an example of when you were faced with…?”; “What would you do in X situation?”).

Social insight is also crucial in these contexts: one has to ‘read between the lines’ to determine what an interviewer wants to know, which so often isn’t explicitly stated in the question. Successful job interviewees are those who are proficient at conveying job-relevant skills and aptitudes such as being hard working, dependable, reliable, able to work independently or as part of a team, and having the relevant skills and experience for the job. For an autistic interviewee, however, inferring that this type of information is required can be difficult; interview questions may be interpreted very literally, and they may be overly honest in their answers (Q: “What is it you like about this firm?”; A: “Lunch!”).

Indeed, a job interview is often principally a test of recall and neurotypical social competence – both of which can be difficult for autistic people, making it harder for them to demonstrate the required skills for the job role in question. Similar problems are encountered in criminal justice system questions that are posed as statements which do not explicitly ask for a response or justification (“So you knew Joe wasn’t going to be there, yet you went ahead anyway”), and in healthcare consultations literal interpretation of questions can again be a major barrier. Most neurotypical people will provide relevant information that goes beyond a direct answer to a question (Q: “Have you vomited?”; A: “No… but I feel very sick”), whereas an autistic person may just provide a literal answer the question (“No”), which can lead to incomplete communication of symptoms and missed or delayed diagnoses. Indeed, rates of almost every type of physical and mental health problem are significantly raised in autism in comparison with non-autistic people, and recent evidence suggests that the way in which people are asked about their symptoms has a significant effect on diagnosis. For example, autistic people are far more likely to receive a depression diagnosis when a standardised semi-structured interview is used compared to other less formal methods.

Crucially, providing more explicit instructions regarding what is required and narrowing the parameters can effectively elicit recall of a similar level of accuracy and completeness to non-autistic individuals. Although free recall is widely accepted in both psychology and policing as the gold standard, to produce the most accurate, uncontaminated witness recall, autistic people may need more guided and focused retrieval from the outset to: (a) support their memory retrieval; (b) reduce implicit social demands regarding what is relevant for recall; and (c) minimise cognitive load and demands on ‘executive resources’ (crucial cognitive abilities that would help us to remember, plan, and monitor our answer to an interview question). To improve real-life outcomes for autistic people, the challenge lies in optimising the environment to exploit their relative strengths whilst also supporting their difficulties (for example, through reasonable adjustments such as removing lighting causing sensory issues, reduced use of open-plan working environments, etc). Accordingly, the focus of our current ESRC-funded research is to provide a systematic examination of factors that both help and hinder autistic people in reporting information in order to develop detailed guidance for how service providers can best facilitate optimal two-way communication when interacting with autistic people.

While there is an accumulating evidence base for adaptations that need to be made to support autistic people, employers and public services need to be sufficiently informed and administratively enabled to adopt these recommendations. Supporting autistic people to be economically active and appropriately engaged in service use not only improves quality of life for autistic people, and relatedly reduces unemployment rates as well as health and police spending (with better quality evidence resulting in more efficient investigations), but also brings a range of valuable but under-appreciated skills to society – from attention to detail to analytical problem solving and creative insights. Indeed, companies such as Auticon, JPMorgan, and Microsoft who have neurodiversity initiatives have reported a range of benefits as a result, from greater creativity to rises in profits. These developments are part of a broader shift from viewing neurodiversity as weakness (medical model of disability) towards differences and even strengths (social model of disability). Historically, disability was seen as a deficit in which policy solutions involved viewing the individual as a patient rather than as an active participator. The 2009 Autism Act was a landmark move from focusing on medical ‘treatment’ to enabling autistic people to enjoy ‘fulfilling lives’, reflecting more of a rights-based understanding. It is the only disability-specific legislation in the UK, introduced in recognition of the uniquely complex difficulties that arise when autistic individuals are engaged with public services. The most recent related government strategy for adults with autism in England, ‘Think Autism‘, identifies a number of priority challenges for action including making adjustments within the criminal justice system and employment, and meeting the health needs of autistic people.

Given that individual difficulties are tricky to spot, a universal approach to giving information in accessible ways (alongside the standard format) is strongly recommended, and removing barriers for autistic individuals can benefit everyone. Indeed, specific issues and differences faced by autistic people can also be experienced by non-autistic people, such as those with ADHD, dyslexia, anxiety, depression, social difficulties, and sensory issues. Traditional initiatives surrounding diversity focus on categorisations of individuals into groups such as gender, ethnicity, or religious affiliation, with policy solutions that apply broad-brush interventions for categorical differences. It has been questioned, however, whether such policies effectively address diversity as a full continuum, including dimensions of diversity that are neither immediately obvious nor inherently collective – such as neurodiversity. Ultimately, the task we are faced with is to develop an enabling environment for neurodiverse populations with effective systems for all. Neurodiversity is a strength – it provides new insight and unique skill sets in employment, which together with improving access to healthcare and justice make a powerful economic case for creating more inclusive policies around communication. ∎

 

This blog was originally published on the University of Bath website – it is reproduced here with kind permission of the authors

The Lost Boys of the Criminal Justice System

This blog originally appeared as a Twitter thread by Mary Aspinall-Miles, a barrister at 12CP. We have reproduced here with the author’s kind permission. Some edits have been made for typos and readability – a link to the original thread is provided at the end of the article.

So let me tell you a story about the Lost Boys of the Criminal Justice System. There are girls too but they are even harder to see because of – well – everyday sexism in the diagnosis of autism.

Autism Awareness Month is meaningless unless we actually start to accept and understand autistics as they are.

(Warning: I apologise in advance if I use inadvertently ableist language or non first person autistic terms. I am not autistic but I try and fail.)

Let me choose Peter as my generic example. He’s no more real than the original Lost Boy, Peter Pan, but just as lost.

Peter is now 19. And when I first meet him, he looks so young and small even in the tiny cell at court. But his solicitors have already sent me his life story.

That’s because they have been representing him since he was 12. It was his kindly solicitor – let’s call her Wendy – who spots that something isn’t ‘right’. She has seen him fidget and stare into space oblivious to the apparent havoc he has wrought. So she gets a report.

Why not his parents, you ask? Well they tried and tried when he was in primary school, but the teachers just said he was naughty. They begged for a referral but were told again and again, “He’ll grow out of it.” At best they get a vague mention of ADHD.

Eventually, after a bit of wrangling with the legal aid people, Wendy gets Dr Bhatt, a psychiatrist to see Peter. Dr B writes her report – the ‘A word’ is mentioned. But that is it. Peter gets little to no support. The school may try to help, but they can’t as SEN budgets are gone.

Peter hits puberty. A hotbed of zits, bum fluff over the top lip and terrible hair. And, [whispers] sexy time. But Peter still likes Minecraft and Pokemon. He sleeps with his teddy at night because Ted never lets him down.

He is desperate to be like the other kids. To fit in. His mum has bought him a mobile phone. Uh oh. Can you tell where this is going?

The other kids are sharing pics of nudie ladies. They show him. A switch goes ping. He wants to find some too.

Peter, with that searing intensity of some autistics, trawls the internet to look. He falls down the rabbit hole. Because social skills and sexuality aren’t his strong point, he doesn’t understand the rules – he looks at images of girls his own age. Then he files them.

He shows them to some ‘lads’ at school as he wants to impress, and is instead met with utter horror. One tells a teacher, then they go home and their parents call the police because they don’t want their precious children exposed to that by that weirdo.

The police take Peter’s phone – he is interviewed and doesn’t get why he is in such trouble, they are just images he has collected. They aren’t real. You can’t touch them. The police see this as calculating and manipulative.

Of course he has horrible images and gets charged. His parents decide to wash their hands of him. And place him into local authority care voluntarily. They cannot cope.

Peter is ripped away from his home. The only people he loves and who understand him. What message is Peter hearing, do we think?

“We are rejecting you, you are defective. We do not love you enough. We are giving up on you.”

(That is a paraphrase/mashup of what I have actually been told by the Peters I have represented.)

His social worker, Jack, tries really hard but they funding runs out or Peter acts up. It never ceases to disappoint how many say they understand autism until they deal with a person in real life who won’t comply/conform to their rules. They never get that autism can affect social skills.

So Peter becomes a piece of luggage passed from one foster carer to a home, to another foster carer to a specialist placement, ad nauseam until he gets kicked out because he is ‘defiant and aggressive’. It never occurs to anyone that Peter needs order and rules.

He becomes increasingly detached because there is no one certain place or person. But he knows that when he is on the internet, all is OK and safe. Maybe if he could look at some girls… Yes this is where we go. He is arrested and pleads guilty. He is now a Registered Sex Offender.

Now virtually nowhere will have him to stay, and worse still his Sexual Harm Prevention Order – which he doesn’t really understand – says he has to tell everyone what he has been convicted of. It’s hard enough to be autistic and negotiate the world, but this too…

Peter has no qualifications. His social worker is desperate to find him somewhere, but can’t. Probation want to give him support via a community order, but can’t as he has nowhere to live. He is homeless. The magistrates remand him into custody. He has no money, no job, nowhere to live and no family.

He will have to present himself at the housing office at the local authority to get a room in a bedsit. The boy who is now 19 and still sleeps with Ted.

Do we think he will, or will he end up homeless? It’s estimated that 25% of rough sleepers may be on the autism spectrum.

And then what? Ah yes, Jay wanders into his life and tells him if he smokes this cigarette, all his pain will go away. It does. It so does. But heroin will do that for you. And now Peter falls down a deeper, darker rabbit hole. And then he turns 21, and guess what?

Peter is now all alone in the world. Lost and falling fast. In and out of magistrates’ court he goes. The police and magistrates are disdainful of him because – and here is the irony – he is seemingly articulate and intelligent. Wendy still represents him at court, and she knows he doesn’t understand.

I represent him because Wendy knows I try to understand this defiant, difficult and angry young man. Mainly it’s because I’ve heard this:

“No-one listens to me. They say they do but they don’t. I find the world confusing. No one helps me to learn to understand – will you?”

Then I usually hear the words that break my heart. The ones that make my tears come in the ladies’ loo at court.

“I miss my Mum.”

There is no end to this story. We need to fund support and help for austism at the earliest stage.

But most of all, we need to listen. ∎

“The little things are the BIG things” – a parent’s view

The following blogs have been written for us as part of World Autism Awareness Week by two members of our coordinator team who have children on the autism spectrum. Names have been changed to protect the identity of family members.

Liz, Business Development Analyst and NPAA Lead Coordinator

When my son was born there were a lot of myths surrounding autism. One myth was that autism is caused by vaccines. My son, now aged 13 was vaccinated during a media climate of TV news reports which concentrated on showing clips of children not communicating, parents convinced that the MMR vaccine was responsible for their child having autism. The research surround this has now been found to be flawed and although scientists don’t fully understand what causes autism, it is thought to be genetic.

Our son received an autism diagnosis in 2011. As a baby he spoke and had a good command of language, but things like haircuts and changing routine could present a problem. It wasn’t until he was at school, when a teacher suggested we get a referral to the child development clinic that we became aware our son may be on the autism spectrum. It took two years of form filling, assessments and appointments to establish that he was autistic. Upon receiving this news I felt relief. I also experienced grief. What would the future hold for my son? Would he reach the same milestones as his older neurotypical brother? But I was also relieved. Relieved, that my child was autistic, not naughty. His behaviour, which could be perceived as stubborn or obstructive was sometimes due to finding the world overwhelming, and he was unable to express this in words.

Having a name for his behaviour – autism – meant I could focus my attention to learning what may help him in difficult situations. Having this information has enabled me to understand why certain situations can cause anxiety, and having more of the understanding of the condition has benefited us a family. We may have to prepare my son for a new situation so he has an understanding of what to expect. Avoiding queuing is something which makes a family day out much less stressful.

Having an autistic child can have its challenges, but I wouldn’t change my son. Autism is part of him. This is why promoting autism awareness is important to me. I’ve learned so much by having a child on the spectrum and I want to change attitudes and perceptions about the condition. I want to ensure those negative images of autism are challenged. I want my son, his peers and the 700,000 people in the UK known to have the condition to live in a world of understanding and acceptance.

Not every autistic person has a savant skill (someone with significant mental abilities far in excess of average). The skills at which savants excel are generally related to memory; similar to the character in the film Rain Man). Indeed, if my son did have an aptitude for understanding the sequencing of gaming machines I would have long since retired! Autism is unique. It’s a spectrum condition, not a line or scale.

Like any parent I have concern about my child’s future, but I worry about some things you may never have considered if you are a parent.

Will my child be able to make his own way to and from secondary school independently?

Will he ever stop wearing gloves during the month of August?

What will happen if they stop making the only brand of toothpaste he will use?

What would happen if my son needed the help of the police?

Would he be able to communicate effectively?

Would my child become a victim of crime as a direct result of his difference? Autistic people are more likely to be victims and witnesses of crime than offenders.

Will he get a job? Only 16% of autistic adults in the UK are in full-time paid employment, and only 32% are in some kind of paid work.

Will my son ever be able to answer a question without answering “I don’t know”.

Would a police officer be able to help him if he became distressed? (My son refuses to speak when things are difficult, because he’s processing information and may not know what words to use).

Will people always assume my son is rude if he does not give eye contact when being spoken to?

Do police officers have enough understanding of neurodiverse conditions? Neurodiversity is the concept where neurological differences are to be recognised and respected as any other human variation. These differences can include those labelled with dyspraxia, dyslexia, attention deficit hyperactivity disorder (ADHD), dyscalculia, autistic spectrum, Tourettes and others.

My interest in promoting autism awareness had led me to becoming my Force single point of contact for autism, and our Force lead contact for the National Police Autism Association.

Jon, Business Development Analyst and NPAA Deputy Coordinator

My son Peter, while not as outgoing as many of his peers, looks like and – trust me, speaks like your neurotypical teenager! However Peter was diagnosed with high-functioning autism two years ago. Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them. Peter suffers from extreme anxiety – his whole life is based around fear and he struggles with social communication. He can easily misinterpret situations and conversation. Living and coping in a world designed for neurotypical people is difficult and challenging and can lead to behaviour issues. For Peter the little things are the BIG things.

Being a parent of an autistic child can be extremely challenging: we face constant struggles, such as explaining on an almost daily basis how Peter thinks and about the condition itself. It can be tiring and frustrating. When the opportunity arose to join the National Police Autism Association as the Deputy Coordinator for my Force, it was an offer I could not refuse. It’s given me the opportunity to raise awareness about the condition. I want to ensure the negative images of autism are challenged. The role has allowed me to pass on my knowledge of the condition and help with the education in how to recognise people with autism and how to understand what steps can be taken in order to communicate and deal with autistic people positively. My lead coordinator and I have recently conducted training sessions with new PCSOs and police officers where we have given input on the subject of autism – the feedback suggests these have been both beneficial and enlightening. We will continue to work with our colleagues raising autism awareness and we encourage everyone to join the NPAA to learn more or seek support. You don’t need to be directly affected to join, just an interest in learning more.

I can empathise with colleagues who themselves may be parents or carers, and who may be going through similar challenges as myself. I have gained an understanding of how difficult and stressful it can be, the challenges, and indeed rewards of raising a child on the autistic spectrum. Knowing you are not alone can make a real difference.

Autism has been highlighted a lot recently in the media with TV dramas such as The A Word and documentaries by celebrities including Chris Packham, who himself has autism. I think it is fantastic the way that my Force and others are embracing autism awareness, and I believe together we can make a real impact in raising awareness and understanding of autism, both within the police service and the wider community.